Starting Actemra for PMR, RA and GCA looking for others currently using Actemra?
- 19 Sep 2016 by Nitrobunny
- 13 Mar 2017
- rheumatoid arthritis, giant cell arteritis, polymyalgia rheumatica, actemra, hospital
Hello! I am starting Actemra next week. I was Dx with PMR in 2004 and in January of this year and landed in the hospital with GCA and the worst headache of my life. I also have RA. I switched rheumatologists and my new one recommended I research and consider starting Actemra. I would like to know if anyone has been successful in managing their conditions with Actemra and any advice anyone has would be greatly appreciated. There are two studies out this year with fantastic results. I'm hoping others may report the same.
My dad is getting ready to start taking Actemra at the suggestion of folks at Cleveland Clinic. It is still considered experimental in the US for PMR/GCA but we are hopeful it will help. He has been on prednisone for about 15 months, starting at 60 mg, only down to 40 now. He has extreme osteoporosis only diagnosed after 5 broken vertebrae and now congestive heart failure, also missed diagnosis. He likely won't start the drug until after the first of the year. I'm praying for a miracle because things are looking grim. Would love to hear about your experience Nitrobunny.
i Started Actemra In Jan.2016 after being on large dose of Pred for 4 years for PMR AND GCA and after failed methotrexate treatment.
I begin to improve after 3rd IV Dose. I was able to reduce prednisone dose from 40mg to 10mg. I was having no flare ups, energy level was increasing and I felt really good.
IN June of 2016 ..after dose 6 ... I had sudden onset abd pain that was a ruptured bowel. ( The number one side effect listed for Actemra). Because I had such a big improvement of the RA problems on Actemra it was decided by me and a collaboration between my internist, Surgeon and RA specialist to remove most of my colon and do a permanent colostomy.
It was a very easy decision for me. I am now back on Actemra. The Pred dose is coming down again and I am relatively pain free. The colostomy is not a problem to manage.
Bottom line, I am happy to be back on Actemra .
Be sure you discuss all the side effects of this drug and what your options are if the treatment fails with your Rheumatologist.
Know All the pros and cons.
Good luck to you.
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